Monday, October 31, 2011

The Final Phase

I first wanted to thank you all for your comments on last week’s blog. I think it garnered the most attention so far. Looking back on my entry a week on, I do see that I was probably not looking at the whole picture and instead “catastrophising” slightly (bad habit of mine!). My husband even gave me new information that I missed in the appointment! I think once you hear one bad thing, you can sometimes stop listening completely and the selective hearing kicks in. I also wanted to say that 36 is not too old to have a baby! Just that if I needed to lose my ovaries at that age, it would prove challenging however many of you have shown me that nothing is set in stone and there are still options. So thank you for your support!

I will not fear that which I can’t control.

This is what I have been repeating to myself over and over again each day through the last week or so. It has been a busy week full of major events, emotions and news. Friday was a huge day for me as I had my last trip to the C-spa. It was a great day and my daughter joined us for the special day. The cake went down a treat and the nurses were so touched by the gesture. They even put out a little Norwegian flag on my table to mark the milestone. I actually couldn’t believe when my infusion was over. It almost went too fast – I wanted to stay in this moment. Every other time I would always ask how much longer, when can I leave, how much is left? But today of course I was so thrilled to finish this part of the treatment; however I was a little sentimental about saying goodbye to the nurses and to the routine that had been my job for so long. They all said they would miss me too! There is also a slight niggle in my mind that I try to suppress as well. There are no guarantees in life and I almost feel like I am tempting fate by saying I will never have to do this again. Because the truth is going through chemo again is something I don’t want to think about but with this whole cancer business – there are no guarantees, just hope. So I hope I never have to see the C-Spa again!

Now it is Monday and the first week of my post C-spa life. How does it feel? Well not too much different as I am still very tired and have developed some strange fingernail pain and soreness. Am hoping my fingernails aren’t thinking of jumping ship especially now that I am finished and my eyebrows seem to be thinning more each day. I have been lucky I know by the fact that I still have some eyebrows and eyelashes left! And my hair is growing fast though the recent drug has ensured the top stays thin and yucky. I also have been able to see what my real hair colour is after having it lightened since I was 12 and it isn’t pretty folks. It is a grayish mousey brown mess and I plan on dying it as soon as I have enough hair! I am also hoping a month from now I can start sporting a Mia Farrow “Rosemary’s baby” style as I am sick of my wig!

So what happens next? Well next week I have some planning sessions with the radiologist where they plan and map out where they will zap me with the radiation. I am then a free agent until November 17th when I begin my daily radiation sessions. What to do with my time? Well my husband and I are having a child free weekend this week courtesy of some wonderful grandparents. It is actually the first time we will have alone together since I was diagnosed that wont involve an operation or cancer treatment! I am looking forward to going out for a meal to a restaurant that isn’t child friendly, sleeping in, getting a massage, and of course having some champagne! I am also preparing to give a talk to some nurses training to be cancer specialists next week. I will tell my story and discuss my involvement in this health and wellness project I have been participating in (what I refer to in the blog as Cancercise). I am attempting to do half of it in Norwegian so quite a lot of prep work will be done in the coming week. I will also be getting the results of my genetic test shortly and it is weighing on my mind considerably. I have a feeling about it but regardless of the outcome, I will just do what I do best and get on with it. There is some peace in knowing and not living with uncertainty.
So the next and final phase of this long ride is fast approaching and I am inching closer and closer to the end. I am realizing how much focus and strength it will take to transition from patient to person. Thank you for reminding me that I am still the same girl you knew last year, five years ago or even 15. I never want cancer to make different from who I was and who I am but as I have said before, just better.

So I will end with a special quote for everyone who has been there for me through this roller coaster ride through visits, emails, phone calls, cards, flowers, care packages, comments on the blog and FB…the list is endless. I am so lucky to have such amazing people behind Team OBB.

The greatest healing therapy is friendship and love. Hubert H. Humphrey, Jr.

A Sentimental and Appreciative,

Wednesday, October 26, 2011

A Slight Curveball

So here I am 3 days before my final c-spa trip fighting this cold that I have had for about 7 weeks now and digesting a lot of new information.

I have been looking forward to this day for a long time. It goes back to May 19th when it was my first trip to the C-spa which feels like a lifetime ago. I remember writing a blog entry the night before and being full of fear of the unknown and dread of what was to come. Now fast forward 6 months later and I have been through the worst nausea of my life, shaved my head and lost all my hair, managed to get 16 IV needles put in, struggled through all sorts of odd side effects and emotions and learnt to be fairly functional on extremely compromised levels of energy. I was actually walking to pick my daughter up from daycare a few days ago and literally had that “Aha” moment when the magnamity of the last year hit me suddenly. I couldn’t believe everything I had been through and managed to deal with. I mean I have been bald and managed to make it work! Go me! So as I look towards my last needle on Friday, I wonder how I will feel? Will I be relieved, will I be scared, will I be oddly sentimental? I mean this cancer business has been my life and there is comfort in the routine of it so I am unsure of my reaction to the conclusion of it. My daughter will be joining us for this final c-spa trip and I am ordering the cake today! I want to make sure the nurses know how much I have appreciated all their support through this process. The cake will say TUSEN TAKK CANCER SUCKS. For the non Norwegians reading this, tusen takk is Norwegian for thank you. I thought it was cute and hell it rhymed too! I really think sometimes we need to laugh about cancer as it has already had too many tears shed for it. And let’s face it cancer does well and truly suck!

Now Friday’s celebrations have been tainted slightly following my appointment with my oncologist yesterday. I seriously find these check ups terrifying and nearly started hyperventilating once we were in the room waiting for him. Once you are told you have cancer once, you can never truly rest easy when meeting your doctor because the unimaginable has already happened. I gauged his face as he walked in to see whether he would tell me something good or bad, however I think oncologists must have the best poker faces in the world. I couldn’t tell anything and he sat down and asked me how I was. Hmm… how I am? Sick of cancer, tired, frustrated and wishing none of this ever happened, terrified! We talked through the next phase of treatment which will involve 25 radiation sessions and what side effects to expect. It will be much easier then chemo in my mind as there are no needles! Radiation involves trekking to the hospital every day for 25 days straight (weekends are off) for a zap of radiation to the area where my lymph nodes were. It is an extra treatment to give you the best chance of killing off any remaining nasties lurking around the area. So according to my calendar, I will get my get out of jail card on December 20th! There will be lots to celebrate this Christmas.

Our discussion then shifted to hormone therapy which I had been dreading. In the beginning, my diagnosis was a non hormone related cancer which is one of the most aggressive but has one bonus of not requiring the five years of hormone therapy that comes with most hormone related breast cancers (which make up the bulk of breast cancer diagnoses). It was a small break amidst a lot of crap and also meant I could go on to have another child two years after my treatment had concluded. But now the fact that my cancer had a slight progesterone receptor (I don’t understand all the pathology or chemistry behind this!) meant that it was advised to do the five years of hormone therapy! I was upset to say the least as it meant taking a pill every day for the next five years, dealing with more side effects and this whole nightmare not being entirely over. Now I of course know hormone therapy is not the end of the world and the side effects are minimal compared to everything I have been through, but it feels like a continuation and it also means I cant have a baby any time soon. And when you have had cancer, time is your most precious commodity and you never know when it will be taken away from you again. I was also angry. Angry at the crappy deal I had been dealt of having this aggressive cancer whose only break was not being given to me!

And our final discussion surrounded the genetic testing of the BRCA genes which I have mentioned in an earlier posting. I bit the bullet and decided to have the test done on Friday. No sense in waiting now as it is there or it isn’t. I am getting a fast version of the test and if it is positive I will know in two weeks. If it is negative it still doesn’t mean I don’t have it but will require further genetic testing. Now the implications of a positive test are pretty major for me as the gene is passed through families. Children of parents with the gene carry a 50/50 chance of having the gene. If I carry either of the genes (there are two BRCA1 and BRCA2 with 1 being the more aggressive of the two), I will need to have another mastectomy imminently and lose my ovaries by 35. Yeah it sucks the big one people! Does this roller coaster ever stop? In my mind I was calculating numbers and 5 years of hormone therapy would take me to 36 and then the possibility of another child seemed to be slipping through my fingers. I hope I don't come across as greedy when I talk about my anger over not being able to have another child because I know many people never get the chance to even have one child. I know how lucky i am to have my daughter! Of course my husband and I want my health to be the number one priority and we are prepared to do everything possible to ensure I remain in remission. But it is a lot of information to process for anyone especially after having already been through what we have. I am praying that I don’t carry this gene but if I am then of course we will deal with it just as we have been dealing with every curveball so far. And how lucky am I to have this gorgeous little girl in my life! The doctor discussed again how strange my case was and the fact my cancer was undetectable which he hadn’t seen before. It made me thankful again for her in the fact that she truly saved my life and that I was in fact able to have her in the first place. She is my little angel and I will tell her every day how I am here because of her.

So after a bit of a shock yesterday, I had a cry while talking to Captain AC and let myself have one day of feeling upset and angry. Then I woke up today and just picked up where I left off. Life keeps going and you either decide to stand still and lament or look forward and continue walking. I want to keep walking because who knows what is around the bend. I am hoping it’s a big glass of champagne and some fabulous cake!

Thank you again for all your support through this journey.

Love to you all,

Monday, October 17, 2011

The Beginning has Become the End

It has been a long time (in blogging time) since I managed to write an entry which is a good thing because it means I am busy living life! I have again been lucky to have two of my very good girlfriends visiting me from London the past week. It is so good to spend time with good friends and everyone who visits always loves the slow and relaxed pace of my life here. Very different from their own busy lives crammed to the rim with things to do! I always miss people when they go and the quietness of the house makes me a bit melancholy. However it is back to work for me too!

I finished my 10th treatment on Friday and am now into my last two weeks of the C-spa. It is truly amazing how fast those last 22 weeks have gone. I mean when you hear 22 weeks it seems like ages especially when those weeks involve being repeatedly injected with toxic chemicals, losing all your hair, fearing even the slightest germ in your presence and just being tired all the time! It isn’t exactly a walk in the park but here I am so close to the end.

I have started thinking about how there will be some things I will miss. Crazy I know – how can anyone miss anything to do with the dreaded big C?? However I will miss the routine and structure to my week and day. There is very little time to sit around and be idle with the schedule I keep and I think it really helps me stay sane. I will need to find new activities and hobbies to fill my day while my body regains its strength and heals. I will miss everyone at C-Town who has made my diagnosis and treatment so much easier to bear. It may sound crazy but I think we managed to make those c-spa trips pretty entertaining (after the needle was in mind you!). The nurses have become friends to me who I feel genuinely care about me. They have eased this rough ride I have been travelling on for so long and they will be missed. I will miss my cancercise group that provided some much needed energy boosts and also the chance to sit and chat with people in the same position and age group. They understood my fears, the milestones and the frustrations that one can only know when living the Big C. I will miss all those wonderful people who have travelled from all corners of the world to help me, heal me and be with me during this time. I have been blow away by the amazing people who literally dropped everything and jumped on a plane to come and live a bit of this rollercoaster with me. Honestly this has touched me to the core and I know when I am better, I just might need to be the one to jump on that plane again to you! And lastly I will miss the opportunity to sit in my bathrobe till 11am in the morning on a weekday without judgment – by anyone myself included.

So I will need to go through another period of transition when I turn in my C-badge at the door in the next month or so. I am sure there will be struggles with that too as I will seek out my new identity and new definition of “normal.” However my life is a blank canvas and I have every color imaginable on my pallet to paint anything I desire and I plan on making a masterpiece.


Thursday, October 6, 2011

2 Years of living, 20 Years of experience

“Nothing is predestined. The obstacles of your past can become the gateways that lead to new beginnings.” Ralph Blum
I have found it difficult to find a moment where I could sit down and really put some thought into my blog or even come up with a good idea for one. This tends to happen when my anxiety levels are higher than normal and I could definitely say that they are these days.
Last week was the 2nd anniversary of my move to Norway and being quite a sentimental gal, it of course made me reflect on the past two years and all that has happened and changed. Now it has been far from all bad but I think at times I have crammed probably 15 or 20 years of life experience and perspective into the past 2 years. So what has happened?
I moved to a new country where I didn’t speak the language and now can pretty manage carrying on a conversation in Norwegian which I think it is a big deal. Let me tell you – learning a new language with a slow adult brain can be a challenge. I came knowing very few people and now have a wonderful circle of fabulous people who are there to share a giggle and also to wipe away the tears. I came with a large bump for a belly which shortly turned into the arrival of my beautiful baby girl and truly changed my life forever. I learnt what it really takes to make a relationship work and also how much effort you need to put into it. There are no perfect relationships and recognizing that makes improving oneself and your partnership easier. We took an empty apartment and turned it into a home where we felt safe, warm and loved. And we finally took the steps to making our partnership legal and officially become husband and wife. Being a romantic in a relationship with an atheist/non conformist Scandinavian, I would say this could be my biggest feat!! I always joke that I had to go and get cancer for him to agree to marry me though I of course know that is far from the truth.
So if you read through this last paragraph you can see how rich and full my life has become in the last two years. Lots of big life changing events that have made me a better friend, loving mother, faithful wife and all in all a better person. Obviously I am missing one major event that happened in the last two years but we all know what that is. I have been quite anxious and scared these last few weeks and at times have become truly terrified of what will be when my treatment ends. I have also been reading some blogs from other young mothers with cancer. I know this can be a double edged sword in that it can be comforting to see how others are coping in the same situation but at the same time it can also scare you. It scares me because not all of these people are getting their happy ending and you just don’t want to even think about it because it suddenly makes it more real.
As I get closer to the end of my treatment, I have been thinking about what happens next. When I lose the structure of my cancer routine and join normal life again, how do I ever feel normal again? And how do I get a handle on my deep fear of this beast returning uninvited? I know I don’t want to be always looking over my shoulder wondering if this thing will be lurking in the shadows again because that just isn’t any way to live. But my fear is only natural and after being through this once, the thought of a repeat performance is truly unthinkable. So as I have been battling my demons, I read an entry from this one woman (a young mother) who is battling breast cancer for a fourth time and has metastasis in her lungs, bones, and liver. Even in her position she still manages to keep fighting and also takes stock of how wonderful and enriched her life still is. There is nothing like someone in a worse position then you who has a clearer and more optimistic perspective to make you think about your own situation. I can’t waste time being chained to this dark passenger just waiting to see if and when she makes a move. I have so many wonderful things to do and enjoy now. Cancer has already robbed me of enough time and I don’t want it taking any more. So little by little, I will try and break those stubborn chains and embrace the fact that right now I am alive, I am cancer free and I am strong. Live in the moment as they say and watch the past float down that river of life.
So what a wild ride I have had in the past two years – mostly good with a little mix of the bad. Yet it was this mixing that allowed me to become this new and brighter person who knows that life is precious, fragile and never to be taken for granted.